Losing it

Image: the view from my bed.

Is anyone still reading this blog? If so — hi. Hello. I’m sorry it’s been so quiet here. I’ve been sick, you see, and not just with my usual combo of ME/CFS and mental health issues. In January a virus decided to settle in on my balance nerve, where the balance organs in the ear communicate with my brain. As a result, my head could no longer understand what was up or down, whether I was moving or sitting still. It’s such a small thing, such a small part of the body, but the impact it’s had on my life is massive.

I spent most of the beginning of the year in bed, clutching my duvet in an effort to still the world. I couldn’t focus on anything more than moving as little as possible. The dizziness was awful. The nausea was worse, and relentless. The headaches were both dull and sharp at the same time. The tiredness was even heavier than I was used to from ME/CFS. And I was so afraid. It’s a terrible thing when your mind literally cannot understand the world, as the lizard part of your brain becomes convinced that you are dying, and the lizard brain does not listen to reason. I only left the house to force myself to various doctor appointments.

Even through all of that, the worst part was that I could no longer read, write, watch TV, use my iPad, or do anything with my phone besides make calls. I couldn’t even listen to music. Whenever I tried, nausea would wash over me like a tidal wave, the world would tilt and spin, and my head would ache as if squeezed in a vice. Effectively I lost the possibility to distract myself, and to communicate with the outside world.

This lasted several months. No books. No movies. No leaving the house, except for fruitless medical appointments and stubborn, stumbling trips to the grocery store. No writing. No music. Just me, in a bed or on the couch, trying so desperately to be still.

I am no stranger to loss of function. I got ME/CFS ten years ago, and with that I lost being able to run and dance and perform. I couldn’t use my bachelor in music. I couldn’t have a regular, full-time job. I lost friends. I lost freedom, the ability to move through the world as I wished. It was like I had to stand by and watch as the world calmly, dispassionately took all this from me, and no amount of pleading or bargaining could stop it.

After years of numbing, sneaking depression, I started to build a new kind of life. Okay, I couldn’t run a band and perform live, but maybe I could still make songs and record them, with some help? Okay, I wasn’t able to hold a traditional job, but maybe my writing would still give me some kind of purpose and meaning? Okay, so I had neither the health or the economy to see the world, but I could learn to find joy in small things, like going to the movies or riding the tram aimlessly. Okay, so it was hard to be social and meet new people, but at least I could make sure I took good care of the friends I had. Okay, my world had shrunk, and I needed to alter my ambitions and desires — but there could still be something. It might still become a lovely life.

Then came the virus, and a whole new level of loss. No, Maria, you cannot escape into a book. No, you cannot ride the bus or a tram. No, you cannot talk to your frinds on skype, you cannot visit them, you cannot text them. No, you cannot look up your symptoms online. You cannot work on your novel. No, Maria, you cannot play music with your bandmate, or start to learn that cello you just bought. You cannot listen to music, not even in the crappy iPhone earbuds.

In the beginning I did pretty good. I was so careful with my thoughts, refusing to fall into depressive loops again. So I thought about my book, the world I had created. I thought about the small improvements I felt, like when I no longer was dizzy when lying still in bed. I found joy in small things, like the luxury of being clean after a shower. Time moved oddly during this period, as an hour lasted a lifetime, but weeks flew by and I hadn’t really done anything, nothing but wait. It was surreal, especially since I was so isolated from people. There were times when I thought I was literally going mad, just for the lack of connection, the lack of being touched. The hardest time wasn’t in the beginning, but rather when I became well enough to realize how horrible it all was.

Time did pass, though. My greatest victory was travelling north, to my home town, to stay with my mum for a month. After six months of dreading even a simple bus ride, I armed myself with earplugs, sunglasses, breathing exercises and some helpful pills, and left. I’ve actually only just returned to Oslo, three days ago now. It’s been hard to be back, in a way, because of all the vivid memories, and because I can see how far I still have to go before I’m as well as I was before the virus.

The combionation of the virus and ME/CFS is tricky, you see. I haven’t been able to find any info about it online, and none of the doctors are familiar with it. Here’s what I’ve been able to piece-together-slash-theorize-about: ME/CFS in all probability “lives” in the nervous system. Some of my symptoms are extreme tiredness that cannot be “rested away”, hypersensitivity to light and sounds, and a slow and unstable immune system. The virus thing damaged the nerves between my right ear and my brain. The virus itself disappeared after a while, but my brain still has to re-wire itself, which is a slow, difficult process. The ruined nerves cause dizziness, nausea, fatigue, trouble focusing the sight, sensitivity to sensory stimulation (like light and sounds), and a very anxious lizard brain that thinks it’s going to die.

The main way to “handle” ME/CFS (there is no medication or cure yet) is to keep your body, particularly the nervous system, as rested and calm as possible, and to not over-exert yourself. The best way to re-train your brain after this virus-damage, is to move your body, to do things that activate the connection between the brain and the body, like “walking on uneven terrain, or exercising”, as they say online.

You’re smart people — I don’t have to explain why this makes it incredibly hard to know what I can do to optimize my recovery.

Right now I can live somewhat normally, for me. I can shower, buy groceries, make dinner. Do laundry. Pay bills. I can even watch TV most days, and I can listen to music and audio books. Alrik and I have even had a couple of short band rehearsals in my apartment. I cannot, however, read books, or use a computer or an ipad or phone for much longer than ten minutes (I’m writing this blog post by hand, on actual paper, with frequent breaks to reast my eyes and brain and body). I cannot sit in cafés or spend much time in busy streets, since all the visual input and noise confuses my brain. I don’t feel comfortable on trams or buses, especially since I know I’ll be exhausted once I arrive; there are few places ou can travel to where they have a nice, dark room available for a quick lie-in.

And finally, it comes down to the ME/CFS, as it always does with me. I’ve basically had to re-learn how to live with it, since my limits and triggers have changed so much. Everything is so much more sensitive now. Resting after a grocery run isn’t just nice, it’s mostly mandatory. I cannot plan more than one “activity” a day, and I need to plan for much more resting days than I used to. Sunglasses and earplugs are lifesavers, not just comfortable. And as for re-building some kind of social life… I’m still working on that, too. I love my friends dearly, but it’s been difficulat to navigate such uncertain, serious waters, difficult for both them and for me. We are still young, after all, and lack both the experience and the language for such situations. But if there’s a will, there’s a way, right?

The two hardest things for me now are the uncertainty of my future, and allowing myself to grieve what I have already lost. Uncertainty is something we all have to live with, of course. And I am thankful for all the things I can do now that weren’t possible six months ago. I certainly don’t want to live in the past, either. But… my stories, my books. My music. My relative freedom. My people. My words.

I have no guarantee I’ll ever recover enough to get my pre-2017 life back. I might, but then again, I might not; I’m mostly worried about how this will affect the ME/CFS in the long run. That will affect my whole future, again, my whole life. And in the meantime, I feel so trapped. I am full of things I want to do and experience and create, but most of it has to just stay inside me, for now.

So I try, when I can bear it, to allow myself to feel that loss. To feel the loss, and what follows close behind: hesitant, desperate hope.

Post script: I’ve just finished typing in this blog post from yesterday’s handwritten pages, and I realize that this might be tough for some people to read, particularly the people closest to me. So let me just add: I did not write this to give anyone a guilty conscience, and I hope you all know how grateful I am to have you in my life. Writing is simply my best way of processing things, and this has needed processing for a long time now.

34 Comments

Maria, you do not know me but this broke my heart in a million pieces. Even though our situations are not similar, so much of what you’ve written resonated with me because I also feel somewhat “trapped” by circumstances right now. I’m sending you all the positive vibes I can muster right now. You will get through this. We will get through this. <3

I don’t know how to respond to this — I just ended up crying for you. Have had a small taste of what it feels like when one’s body and mind just won’t function, the amygdala going completely haywire, and it was hell for me. And still it’s nowhere near this. I can’t understand the extent of this. I can’t even imagine.

Even with all you are going through, you still greatly inspire me with your writing. Something that helps me when I’m going through hard times, is to remember this: This may be a different way to live…but it is still a way to live.
You are in my prayers <3

Oh, goodness, I can’t even imagine going through what you have but am so sorry to read this. Even about this you write so masterfully.
I hope so much that things improve for you.
One thing you didn’t mention and I wonder if it could help; a medical use pool? (Like a swimming pool, but warmer and of course a controlled environment) Perhaps the combination of the support the water gives you in holding your weight, combined with the very physical experience, could be a medium that might bridge that gap? Perhaps could provide some of the physical stimulation that your recovery from the virus needs, without wearing you out too much given your existing condition. Please forgive me if it is annoying that somebody who doesn’t really know has a suggestion, it just struck me that you hadn’t mentioned it in your explanation of your needs and limitations.
Best wishes.

I am so sorry to hear you have been in such pain and experienced such heartache. I cannot imagine what you are going through; as someone battling depression and anxiety, I know how hard it can be when I become physically ill and have to balance what’s best for both my physical and mental health, and trying to imagine how you must be feeling as you try to find the best way forward is daunting. I admire you so much for your resolve and determination, and I am so glad to hear that you are getting better, even if progress is slow. I will be sending positive thoughts your way for a steady recovery, hoping that you will slowly get to a place where you feel like you can be yourself again.

I’m so sorry you’re having to go through that. I had that same virus years (and years) ago. Actually, it reoccurred twice. I lived on Dramamine. It’s terribly debilitating.
I’m also homebound. I have Myasthenia Gravis and Rheumatoid Disease. I haven’t been able to drive for about 7 years, now. I’m unable to work or do much of everything. It’s a grieving process and should be acknowledged as one. It’s a true loss to lose the life you were accustomed to living. It helped me to recognize that early on. I knew I was going through stages. So, I expected changes. I knew I would get through it if I didn’t fight the grieving. I didn’t embrace it, but acknowledged it for what it was and looked forward to getting through the other side. With chronic disease the process does repeat itself from time to time. It gets easier to deal with, though. When it rears up, I’ve learned to start listing what I’m still able to do. I go out of my way to look for beauty surrounding me. Sometimes it’s the birds singing outside or the little smile my dog does when I scratch his “paw pits”
Acceptance is a blessing. I hope you get there soon! Just know you are not alone! The gifts you have to offer don’t disappear with disease or disability. I’m willing to bet, you’ll realize a gift you were unaware of previously!

I’m so so sorry you’ve had to go through this. I, too, have been suffering from vertigo lately but not nearly as debilitating as yours but at least I can offer some empathy. It sounds awful😢Wishing you the best and a speedy recovery❤️

Oh Maria- I am so very sorry to read this. I can’t imagine how difficult this has been for you, and continues to be. As others have said, you write about your struggles so eloquently. I am thinking of you.

I have loved reading your blog for years now and used to check your page every week for new posts. Your voice on paper is amazing, and when reading in the past, there were times I felt less lonely from laughing at the tiny jokes you would weave into your posts. I was so sad when you stopped posting as much. I know we don’t know each other, but I enjoyed reading what you had to say about so many various subjects.

All this to say, never feel guilty about not having time to blog or not having time for social things. I too have suffered chronic illness for the last ten years (although not as severe as what you ate experiencing) and I know how discouraging it is when people cannot/do not try to understand what you can or cannot do and why. The people who value you and what you have to say will never leave! And I will always keep reading your posts when you feel up to writing them. Your life and what you have lived through with such grace is inspiring. Thank you for that.

Hi, I usually don’t comment blogs, but after reading your last post I felt like it was important.
I have been following you for a while and I appreciate the way you write about your inspirations and daily life. I hope you can continue to post once in a while and moreover that your daily life can get a bit more “liveable“. Lots of greetings from Switzerland. Take care

Hi Maria, It sounds like you’ve been through hell. I myself know a bit of what it feels like to be trapped in your own body. I had cancer and went through chemo and it was just absolutely horrible. So I kind of understand what it is like to not be able to distract yourself from nausea and just feeling absolutely broken. And I also understand what it feels like to be able to function even less after something like that. That is just such a loss. So I wish you all the best for dealing with your loss. I also wish you lots of good distractions.
It’s so hard having to deal with not being able to do the things that you want to do, and things that all the people around you seem perfectly capable of doing. It’s so hard to change your mindset like that, to give up some dreams or adjust them heavily. I totally understand, it’s not complaining at all, it’s really a grieving process that you have to go through.

I absolutely am still reading! Your essays have helped me through crises of fashion, hair, inspiration, and personal life. I value the simple beauty and kindness that defines your writing and outlook on life. I can’t imagine what you’re going through, but I hope you know that you bring goodness to the world just by being you, no matter what.

I admit I don’t know what to say. I’m not sure what words of comfort I can say that haven’t been said better by those closest to you or even those who have commented before me. You have been so incredibly strong in the face of an enemy you cannot escape: your own body and mind. The fact that you have put yourself through the pains of writing out your harrowing experience (in exquisite prose as always) only exemplifies how much determination and care you possess in regards to your life and the people in it.

You are powerful. Please know that.

I wish that I could offer you more than small black text on a white screen.

I’m another longtime reader of this blog and look forward to every post! You have such a thoughtful, unique, and creative mind, Maria. I hope to see more of your writing soon. Stay strong and know that there’s so many people around you who care – even random people like me on the internet. ^^

Take care of yourself and continue to enjoy those little moments of rediscovery. I’m sending you warm thoughts from California.

Will it help you to know you helped somebody? You made me realise that while my mind is “broken” and don’t want to live anymore, my body is still functioning relatively well for a 53 year old. And that I should tell my self to shut up and suck it up, Buttercup. There are fascinating, talented young people out there who would give anything to have my even aching and sore old body, as it is so much better than theirs.

Please don’t stop writing… from a new subbie who found you on Pinterest in an old fashion post.

I just visited the blog for the first time in a few months and am so sorry to read about your illness, Maria. I hope things have got better since you wrote this. I have always found your posts so useful, thought-provoking and, above all, beautifully written. This one is exquisite. May you find healing and joy.

Hi Maria,
I don’t very often comment on blogs, and of course I don’t know whether you’ll read this comment at all but I found your blog this morning whilst searching for pixie haircut advice (yes, I’m one of those!) … And I’ve been sat in bed for the last hour scrolling and reading, having just reached your last post.
Your posts have made me smile and cry and I found myself hooked. You have that comforting way of writing that all my favourite writers have, which makes the reader feel like a dear old friend. Like I’m in your world, sitting by your side as you tell me about your day, sharing every high and low.
That’s a beautiful gift to have. I hope you get through this illness and come out of the other side fighting. You’re an inspiration.

Sending love and courage to you beautiful Maria. I hope that you are feeling better and too busy to update the blog. I hope you are not suffering. For those of us who spend energy “just” getting through the day, you are not alone. We may each be shipwrecked on our own forcibly private islands, but our thoughts and care form links that reach across oceans.

Maria, I just randomly clicked on some old blog links and came across your latest post. I was so sorry to hear of your painful adventure with a debilitating virus. I too have been bed bound for months at a time with dizziness and understand your pain. If it ever comes back, I wanted to let you know that Functional Neurology is what saved me from vestibular hell and encourage you to find a doctor that practices it. They can help you adapt to the damage that your vestibular system is undergoing and help you compensate for it. I know that there are doctors that practice it all over. You can read a bit more about it on my website! Or feel free to email me if you want more info. 😉 Blessings, Sara

Best of luck to you Maria. I just found your blog today. I want you to know the quality of your good work still lives on despite your health issues. Kind of like a great Caravaggio or a Picasso. Thank you